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POTS better, energy better, PEM is raining on the parade

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Never Give Up, Mar 24, 2015.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    What do you do when you have more energy, but using it gives you PEM?
     
    oceiv, rosie26 and Farmer like this.
  2. charlie1

    charlie1 Senior Member

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    We're told that if you get PEM, you've done too much. I know, difficult isn't it? Very frustrating when you feel you finally have the energy to get outside and take a walk but end up paying for it. I supposed it'll take more discipline to stay within the 'energy envelope' and STOP an activity BEFORE you get signs of energy depletion.
    I'm finding this to be no easy task but don't know what else to offer you.
     
    rosie26 and CantThink like this.
  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Oh my gosh, all he did was ride in the car and now he can't move or speak again!
     
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  4. charlie1

    charlie1 Senior Member

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    I'm so sorry. I HATE PEC (post exertional crash). When first ill, I would get it from just taking care of basic hygiene. If I had the energy to talk, my words would slur and then I'd pass out. When I could eat, I had to be spoon fed.

    It sucks and I'm sorry about the relapse :( All that can be done for now, as far as I know, is rest. Do nothing more.
     
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  5. Mary

    Mary Senior Member

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    Branched chain amino acids and glutamine are helping me a LOT with PEM. I had been crashing faithfully for 16-1/2 years, and even though I felt better overall than 10 years ago and had more energy, I still had no more stamina and would crash when overdoing things. I can't tell for sure yet, but the BCAAs and glutamine may have stopped PEM for me. I definitely can do a lot more than 4 months ago when I started the BCAAs and glutamine, though I don't know my limits yet. You can read more about here if you're interested. There are links to some articles in the post:
    http://forums.phoenixrising.me/inde...s-to-have-stopped-energy-has-increased.36390/
     
    Misfit Toy, Never Give Up and Hip like this.
  6. charlie1

    charlie1 Senior Member

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    Mary, I've just started K-PAX (amino acids and antioxidants) in the hopes it will be as helpful as some others have reported in regards to their PEM. But it does not contain BCAAs or glutamine. What brand(s) are you using and where do you buy from?
     
  7. Mary

    Mary Senior Member

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    Hi @charlie1 - here's what I took when I first started BCAAs in November 2014:
    http://www.iherb.com/MRM-BCAA-G-600...c=0&lc=en-US&w=mrm bcaa g&rc=524&sr=null&ic=1
    I either took 6 capsules twice a day (on an empty stomach - very important not to take it with food!) or else I divided it up into 3 doses, cannot remember. All I know is I crashed several days later but recovered at least 30% quicker than normal. I've been taking BCAAs and glutamine ever since and it's possible that PEM has actually stopped, am not sure yet.

    I've gradually cut back my dose on the BCAAs. Right now I'm taking http://www.vitacost.com/optimum-nutrition-bcaa-1000-caps-1000-mg-400-capsules-3 , 3 capsules twice a day on an empty stomach, PLUS 1000 mg. l-glutamine (Now Brand) twice a day. So I've cut back a little on the BCAAs though still take 2000 mg. a day of l-glutamine.

    As you can see, I've bought BCAAs from both iherb.com and vitacost.com - I know the MRM BCAAs are available elsewhere (e.g., Amazon) You can buy Now Foods l-glutamine almost anywhere.

    If you look at the post I linked above in my first response to you, you will see several articles about BCAAs. I'm not going to relink them here, but I think they're really worth taking a look at.
     
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  8. charlie1

    charlie1 Senior Member

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    @Mary Thanks for the info on the brands and where you buy. I did look at the links...that's what convinced me that I should trial those 2 things :) Glad you posted them!

    If your PEM has stopped because of those supplements, that's amazing!! Keep us posted!
     
    Never Give Up likes this.
  9. Mary

    Mary Senior Member

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    I will - am keeping my fingers very tightly crossed!
     
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  10. SOC

    SOC

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    Use the extra energy to heal, fight infections that might exist, and slightly increase activities of daily living. You can also try doing slightly more in short time increments so you still stay under your PEM threshold but get a little bit more done overall.

    More energy does not directly correlate to less PEM, as I discovered to my detriment. I did manage to get more done once my energy improved, but only by doing things 2-5 minutes at a time with rest breaks between. I certainly wasn't taking a walk, or going grocery shopping, but I got to shower more often and got more housework done.

    I seem to be having some luck increasing my PEM threshold with high-dose CoQ10 (1200mg) as is used in mitochondrial disorders. I still have a relatively low PEM threshold compared to some patients, but I can work at an easy job and go grocery shopping without a cart if I plan carefully.
     
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  11. charlie1

    charlie1 Senior Member

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    How true that is!
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    I have not read the links in this thread yet but I took l-glutamine (NOW brand) and d ribose for about a year and they did nothing for me (good or bad.)

    I have not tried BCAA's but it is one of the things that my husband really wants me to try. I will investigate this one further and thank you for the info.
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    @Mary -hi, Mary. Do you know is it glutamine, or glutamate that is excitatory? One revved me up, but good. The one that helps the stomach.
     
  14. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    And the reality of a "complex multi system disease" hits home.

    Good advice all around, especially the practical side of resting.

    @SOC I've just started reading your "How long does your PEM last?" It is very enlightening. It looks like it is going to take a long time to figure all of this out.

    Your observation that, "More energy does not directly correlate to less PEM." sure rings true in our house today. He was trying so hard to mostly recline in the zero gravity chair yesterday(it help his POTS), when he really felt like sprinting through the yard. Just a simple car ride...I don't know if the POTS or the exertion triggered it.

    He has a 2 hour car trip to see Dr. Chia coming up on Thursday, it's scary to think what might happen.

    Any advice on how to minimize POTS in the car? Seat belts can't do their job if one is reclining.

    He tried the CoQ10 before and it made him feel worse. Now I'm wondering if some approaches can only work if certain other symptoms are being treated? Maybe some treatments require supportive synergies.
     
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  15. charlie1

    charlie1 Senior Member

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    Yes, some supplements work better when added with other particular supplements. PR member will be able to give examples better than I can think of right now.
    Make sure he's well rested and hydrated leading up (starting now) to the appointment. In case POTS is involved, have the car parked as close as possible to your house door to minimize time he'll be upright. And when arriving at the clinic, have a wheelchair ready to bring to the car door so again less energy is exerted. (perhaps dr. Chia's office supplies one or you can find one to borrow or rent for the day if you don't own)
    The less amount of walking, the better preservation of energy.
    When I was first going to my out of town appointments, I'd tinker around with the seat belt on me while reclined and just put up with the uncomfortable feeling. Other cars may not have such a long belt as I did (but I think most will work). I'm NOT condoning being in the car without wearing a seat belt but In my case, my POTS was so severe that not being reclined was not an option or I'd have passed out from sitting up too long.
     
    SOC likes this.
  16. SOC

    SOC

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    Ain't that the truth! Sigh.... People who have been dealing with this illness for decades are still trying to figure out how to manage it.
    POTS seems likely, but obviously nobody knows for certain. Is he being treated for POTS (or some form of OI)? Is he fluid-loading at night and in the morning? Is he drinking 2-3 liters of water daily, at least 1 liter of which is electrolyte water? Does he wear compression socks? I doubt you'll make much progress with PEM if POTS is not under control. In fact, it might not be PEM, but exercise intolerance from dysautonomia which is a difference beast and more amenable to treatment. If that was under control, you might find his PEM threshold is a lot higher than it currently appears.

    Did he do more than ride in the car? Walk around in a store? Walk more than usual going to and from the car? Was there a lot more noise or visual stimuli than he's used to? The exertion of a car ride could PEM him, especially if he's mostly bedbound, but POTS seems the more likely possibility if he doesn't ordinarily sit upright with his feet down. There were years that I couldn't sit at the dinner table without difficulty. I was either in bed or a recliner with my feet up, including for meals.

    When daughter and I were first seeing our original ME/CFS doctor, we couldn't sit up in the car for the whole trip -- 6-7 hours. We took turns lying down in the back. We got a couple of seatbelt extenders so we could lie down and belt in with two sets of belts. If he's a small guy, you might not even need the seatbelt extenders, just loosen the seatbelts as far as they'll go. Admittedly, it's not as good as sitting up and being belted in normally, but it's pretty good and probably sufficient. It got us to the ME/CFS specialist, which was critical to improving our health, so it was worth it.

    Beyond lying down in the car, you can make sure he's well-hydrated by fluid-loading (500-750 mls electrolyte water before bed and again before getting out of bed in the morning) and making sure he drinks a lot of water all day. There are some ways of checking whether he's dehydrated. (Don't take my word for these; look them up to make sure. ;)) One is narrow pulse pressure -- the difference between systolic and diastolic BP is 30 or less. Closer to 40 is best for a lot of us. Another test is the pinch test for dehydration (look it up).

    You could also try to find ways to get his feet up during the car ride. Perhaps put him in the back seat, and fold the front seat down so he can put his feet up on it. Again, not as safe as sitting upright normally, but not a huge additional safety risk.

    I think Broderick's work is suggesting that -- that certain treatments work better if done in a particular order.

    CoQ10 affects different people differently. Some people feel very wired on it. I suspect response to COQ10 may signify degree of mitochondrial dysfunction, or some type of mitochondrial dysfunction, so those who get wired on CoQ10 have enough CoQ10 already and adding more just over-revs them.

    In my experience, it's almost impossible to tell if some treatments are helping if OI/POTS is not under control because one is constantly having POTS episodes which confuses the issue.

    Does Dr Chia treat POTS? Have you talked to him about Florinef or other drug treatments for OI? Do you know if your son has POTS or some other form of OI?
     
    Last edited: Mar 25, 2015
  17. Mary

    Mary Senior Member

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    Glutamate is excitatory. Glutamine is supposed to heal the gut, as well as help the immune system and energy.
     
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  18. taniaaust1

    taniaaust1

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    I have very severe POTS so cant sit in a car with my legs down. What I do is recline the seat so Im laying back and I put my feet up on the dashboard (yeah probably not too safe in an accident but I'd just be far too uncomfortable doing anything else.
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    @Mary Can I send you a PM some time to learn more about BCAA's and glutamine from your experience? I will read your links first so I know what I am talking about and focus my questions!
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    @Never Give Up I'm not sure if I have any words of wisdom beyond what everyone has shared except that I would definitely use the wheelchair if at all possible for the entire time he is not in the car. Best wishes for his appt with Dr. Chia. You are a GREAT mom, I hope you know that, although I am sorry your son is so sick like the rest of us :cry:.

    ETA: Do you stay at a hotel overnight for these trips to avoid four hours in the car in the same day? When we go to OMI, it is a 6-7 hour ride (each way) so we stay in a hotel. We learned from our mistakes last time and will not repeat them on my next trip in the summer.
     

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